Online Directory

Ann - don't stop! I went straight to the Files and found Member
stories with no problem - it's wonderful! Are you going to be able to
put them all in that way? I wish I knew how to help :-( I'm home
full time (except for PT 4 times weekly) and wish I could help out
some. :::sigh:::
Great work Ann!
~Mary~

Hi Kathy - I haven't had a chance to post my "story" yet, hopefully
over the weekend sometime - but I am desperately trying to keep up
with the posts. Every couple of hours I come back and --boom-- there
are tons of posts!!! ANyway, I just wanted to let you know that I am
on Mobic and consider a blessing. I was prescribed it for my
arthritic knees ( chondorcalcinosis/osteoarthritis) and felt better
immediately. I say give it a whirl! Just figured I'd let you know
that a flatback sister was on the same med!
Valerie from RI

I was away for a couple of days and can't believe how much activity
has occurred since Tuesday night. Cam, Thank you so much for getting
everything set up. YAY! I am glad to see all the enthusiasm!!!
While reading the posts, I started extrapolating the personal
stories and posting them in the files section in a folder called
member stories. I thought this would be an easier way to keep track
of everyone's situation. I find it hard to search through past
posts. Hope it is okay that I moved forward on this. If anyone has
any objections just let me know. If someone wants to edit or post
their own. It seems pretty straight forward. Edie, I posted your
story. If you don't want it there, just delete it.
I also started a list of recommended books in the database section.
It is easy to add a record(s).
Reading the posts, I also thought it would be useful to have a chart
in the database section that would give an overview of members. I am
going to go ahead and build it and add my info. I would be happy to
start filling in the chart from the personal stories unless I am
told not to. Members will also be able to add their own information.
It can be changed or totally deleted...whatever. Please if I am over-
stepping here...just tell me to stop.
My sidekick (my daughter, Emily) is off to camp for two weeks. She
will be fine but I will miss her terribly. Anyway, this is perfect
timing for me to have a "project" to work on.
I will re-post my info and reply to messages soon.
Ann

Right on Cam! What a wonderful idea! Not that I know of a way mind you......I just think it would be superb if somehow these stories could be connected to the members. Just this afternoon alone, I think I've read at least 4-5 in a row and am already overwhelmed. There's just got to be a way! That would be so cool to be able to go in and read background stories without having to dig through all the posts! Any ideas maybe Scott?

~Mary~

Sounds like your curves are about what mine were when I had my first
fusion (60 and 48, give or take a bit). Since you're case is
undoubtedly different than my case, I'm not implying that you need
surgery.
If you have anything you want to kick around, let us know.
Scott

This probably goes to someone who has a better understanding of our
software here...but as I am reading all our introductions it struck me
that it would be great if we could somehow link together the intro
post with the member listing. In other words...say a year from now a
new member jumps in and is having troulbe remembering the particulars
about a poster...if there was a way to quickly find that the intro
post was #45, they could bring that post up and review the posters
details...I know even today it is hard to track of where everyone is.
I think Ann is thinking along these lines too. If anyone has any ideas
sing out.
Maybe we just have to do it as a database? Cam

I met a couple of you on the OTHER site but I haven't posted much so
here's my story.
My dad first noticed my back when I was wearing my first tie-dyed t-
shirt. This was about 1968-70. We were living in Japan at the time,
yes, I'm an Air Force Brat. Born and raised and married Air Force
(my husband got out after six years, and we have been in Houston, Tx
since). My parents took me to the doctors right away but nothing was
really said except that I had scoliosis, I was about 13-14 at the
time. Moved on from Japan to North Dakota, Oklahoma, and then
Germany when I was 17-19. The doctors there did all kinds of x-rays
and measurements and said to keep an eye on it.
I got married in Germany and a month later came back to the states
to Tinker AFB in Okla. City. Had my daughter there and we continued
on with our life. Everytime I would go to the doctor I would tell
them I had scoliosis and they would just say you sure do. It was
very obvious, ribs on the right side sticking out in front, ribs on
the back side sticking out in back, right shoulder lower, all the
signs. After having my son, 7 years later, I starting having back
pain. Thought it was from carrying him, he was 10.3 at birth and 30
lbs by a year. Ignored the pain and went on.
January 2004 talked to the doctor about the back pain and maybe
seeing a chiro. She took an x-ray and called me the next day and
said I was schedule to see a spine specialist. I had DDD, arthrisis,
and MARKED scoliosis. Saw the spine dr., took more x-rays, came in
and told us the curves were T-79 and L-44. Asked if I wanted
injections, said it wasn't really going to help, that I really
needed to see the surgeron.
Had my first A/P surgery on April 8, 2004. This was a 15 hour
surgery. I had a thoracotomy and anterior thoracic diskectomy and
fusion from T-7 to T-12 and started the posterior portion. That part
of the surgery was stopped because they could not get the rods to
form or fit to my spine. The doctors also found a partial vertabra
that didn't show on any x-rays or MRI's. Different rods were
obtained and the rest of the procedure was finished on April 12,
2004. On that day the postior fusion from T-2 to the sacrum was
finished and also had lumbar diskectomy and fusion at L4-S1 throught
the belly. Ended up having 1 rib removed, 6 discs removed, and 7
units of blood given. I ended up with an ileus and was in the
hospital for 2 weeks. I needed to use the walker for a few months to
get around and then a cane.
My sagital balance was off somewhere. Went to PT for 2 months
because I had alot of muscle atrophy. Went back to work at 5 months
post-op with the cane. Could not walk upright without it. By the end
of the day I was so bent over and hurting so much I would come home
and crawl into bed. June 2nd, 2005 I had an pedicle subtraction
osteotomy done at the L-3 level. The doctor took out 3 cm (a little
over an inch) which pulled me back up 30 degrees. I have just
started therapy again to work the hip flexors and the rectus muscles
(very low ab muscles). The doctor said according to the x-rays I
should be fine, but when he looks at me I'm still not quite right,
so we are hoping this works. I do not need the cane now and can walk
slowly upright while concentrating on holding in the ab muscles. I
still have pain, the therapist thinks it's from the rectus muscles
being so weak and pulling and stressing the back muscles. Sure hope
that is what it is.
I will try to post my before x-ray under the photos. My after x-rays
and nothing like you all! Sometimes I think that I am glad that the
doctor's didn't do anything, but the deformity of my ribs can't be
corrected. I am just glad that my sternum is now back in the center
of my chest and my lungs aren't being jabbed by the left ribs
anymore. I'm sorry this is so long. I am so glad that this site has
been started! Cam, thank you!!!!

Hello to Ev1:

I just thought that since there is already a Nancy who is a regular member that I would in the future sign myself as Momo as in most of the cyber world my Nickname is momoflacrosse lol since both of my boys play lacrosse.

Glad to see that you all have sorted things out and started this off shoot - it will solve the issues I am sure.

I have not got flatback as I have never had surgery for my scoliosis - it is now progresses to 60 degrees thoracic and 45 lumbar but I still find useful info from those of you that post here so thank you all for letting me join in and for all the help I get

Momo(Canada)

Hi Lisa - I wish I could tell you I had the same problem, but my feet seemed to have turned 'out' since my surgery. I feel like I'm walking like a duck...or what they call "easty/westy".

Go figure!

~Mary~

Yes Folks,
That's me, a Harrington Original. I was 14 when I first found out I
had scoliosis. Within a few months of those first x-rays, I found
myself in Houston, Texas and under the watchful eye of Dr. Paul R.
Harrington, himself! My curve was only about 20 or 30 degrees at the
time and he suggested watchful waiting. By my next appointment my
curve had progressed to 50 degrees, and it was decided the best
solution would be surgery.
I was 15 that May of 1967 when I had surgery at Methodist Hospital in
Houston. This was Dr. Harrington's stomping grounds, and he always
had a gaggle of students following him around. The surgery only took
a couple of hours, and I required one unit of blood. He was able to
reduce my curve from 50 degrees down to 12.
I know many of you have heard that Harrington rods or Harrington rod
surgery involved only one rod and a couple of hooks, but that wasn't
always true. In my case, Dr. Harrington used two rods and 11 hooks!
You can easily see 6 of them on the standard 36" standing x-ray we
all came to know so well.
Harrington also did not use any bone grafting material other than
the "knobs" on my spine. (He changed that in later years, and began
using a hip graft.) I am fused from approximately T5 to L1, but the
rods extend to the end of L2. I wore a "strapless" cast with a heart-
shaped middle for 6 months. Dr. Harrington carefully crafted an ample
bosom using surgical masks. In many dresses you couldn't even tell I
had a cast on! The first 3 months I was completely flat in bed; the
next three months I was allowed to go to the bathroom and sit for
meals. I also had a strict walking program.
When I first stood up after 3 months, my fusion slipped a bit and
then held. I wore a custom made French corset for 3 months after I
got the cast off. It had about a dozen huge buckles and straps from
just under the breasts to well over my hips.
I always felt somewhat fragile, but fine. About 5 years after my
surgery, I was in a severe car crash. We were hit from behind by a
logging truck and thrown across four lanes of traffic and then some.
Fortunately, I had on a lap belt (but no shoulder harness). I
sustained a severe whiplash and lower lumbar strain. The fusion held.
I was in my mid-thirties when I started having trouble with my back.
I had two adopted chidren who kept me on my toes and there was plenty
of bending and chasing. I was having trouble with my knees, too. In
fact my entire skeletal system. I went to parade of specialists in
the next few years. Among things we discovered was that I was missing
a set of ribs, that my hips were 12 degrees off in their sockets,
that my kneecaps were kite-shaped and off to the sides, that for some
unknown reason I had "hot spots" over the sacroiliac joints, and I
had one of the worse cases of tibia tortion the orthopedist had ever
seen! Throw in osteoarthritis in both my knees and my hands, a
constant throbbing from the hips down, and clinical depression. And
oh yes, the rod was broken!
During one "episode" I had shooting pains that stretched all the way
down to my foot. I was sent to bed for several weeks and eventually
with CARE I lived an active, but compromised life. I saw both a
scoliosis surgeon and a neurologist. Fortunately, they left me alone!
Fast forward about ten years and picture a grandbaby. Suddenly there
were so many things I couldn't do! The least little thing made my
back seize up and go into spasms. I still did't know anything about
flatback, and assume I am just getting older. Then one day while
searching "Harrington Rods" on the internet, I came across the
Elizabeth Mina articles. I couldn't read them fast enough, or stop
crying. It sounded so much like ME! But is it? I still don't know.
You see, I only recently got insurance coverage after almost two
years without. I must wait 8 more months before pre-existing
conditions will be covered. Texas Rehabilitation did send me for an x-
ray and a quick ten minute consult with a spinal surgeon (not even a
scoliosis expert!) and I do know that at one level I have lost over
half the disc height. I believe there are several levels involved,
but I don't know for sure. I have lost at least 1 1/2 inches in
height.
A few months ago I began walking with a cane, and I now sport a
handicap sticker for my car. I honestly had no idea how little I
could do because I had slowly given up almost everything. I have
severe neck pains, hip pains, knee pains, and sometimes back pain. I
do almost nothing. I can't clean the house or shop by myself. I can't
even stand and cook a dinner if it takes more than 10 minutes! I sit
down a lot and lean on anything available.
So for now I wait, and learn, and hope. I'm trying to find a new pain
med. Bextra was pulled off the market, and in spite of my GERD my
doctor wants me to try Mobic. Narcotic drugs make me sick and anti-
spasmotics make me severely depressed. I'm trying to lose weight.
I am thankful for this site and the opportunity to share with and
learn from so many fine men and women.
Txbluebelle,
Kathy

Hi All, I know that many of us covered this issue before but Karen
brought up something that has made me curious.
I have noticed that my feet seem to be turning in. I mentioned before
that I thought my torn cartledge in my knee was related to my back
though no one else does. If my feet turn to the inside, it seems
logical to me that it would change the way my knees work.
No one could really explain why my cartledge tore. They told me it was
wear and tear, but it did tear on the inside and it wasn't due to
injury. Just wonderng if anyone has the same problem with their feet.
While I'm at it, I have one more question. I sleep at night with a body
pillow so I can prop my leg up on it when I roll on my side. (Wedged
between my knees...) Lately, I have noticed that when I try and roll
over it feels like my hip is out of socket. I try to roll it back it
but it is actually more comfortable when it feels it is out of place
while I am on my side.
Don't know if that makes sense, but I'm not sure how else to explain it.
Lisa

Hi Karen,
I am glad to see you here and look forward to getting to know you
better. It is wonderful that you have decided to post too...I know
it is hard to jump out of the shadows...and maybe harder on an
established board...but I did learn that the the more I put into the
group, the more I got back...so I was well worth "stretching" myself
out of my comfort zone level a little.
Cyberspace makes different relationships...ironically, I felt I had
to follow up and actually meet some of my e-buddies...and I think
it's fair to say that without DianneS, Ann and Carolyn I would have
had a much grimmer experience in Boston for two weeks. I know the
positive energy of people rooting for you really helps to get you
motivated to do what needs doing...whatever it may be. For people
like us...well, there just aren't people in the neighborhood who can
really understand the experience we are all having.
I am glad you met Mary....I am thinking it will be awhile til I get
to meet you "left coasters"...but who knows...maybe we can get the
idea of a get together..or in several areas on the discussion list
soon.
Nice to meet ya, Cam

Hi Carol,
I knew we would not be complete until we had your wonderful,thoughtful
self here here for us to enjoy. Cam

Lisa and Edie,
Lisa....I had the same reaction, big belly laugh....I actually love
dried prunes however I did have to reaffirm my relationship with
them post surgery....Edie are you recommending the prunes for
feeling low or the after effects or surgery or both? Its great
advice no matter what....
Still smiling,Cam

Karen - THANK GOD this new group has gotten you out of the lurking mode! I was hoping it would, as even I couldn't get you to post at the other one! Say, do you (or anyone else) have any hints on how to get in to see Dr. Hu? They've told me to fax my info, and I have been - since May - and all I get when I call is a rude girl saying "nope, your name isn't on her list to call for an appointment!" and that's all they'll tell me. I'm so frustrated!!!

And what are you doing Karen.......waiting for me to schedule my surgery so we can go in to have them at the same time? LOL Seriously, how are you doing? I know that I've gotten much worse since we met. How about you? I don't get out that way much anymore. Do you ever come up this way? Maybe we could meet halfway sometime?

Hugssssss - (and don't go back to lurking!)

~Mary~

Hi Everyone
My Name is Karen and I have been a lurker for a couple years on the
other site!! I am so thankful a new one was started cause it was
getting a little too much with the problems! I had original harrington
surgery in 1979 at Rush St Lukes in Chicago and I was 13! in 1983 I had
to have one of the broken rods(Hook) taken out! Then in 1986 had to
have a lateral lumbar fusion, and in 1988 had an anterio/posterior
fusion with Edwards pedicle screws from L1-L5! ANd then the rest is
history! over the years been tilting forward more and more! And it
does not help that I also had tohave both ankles fused cause of the
spinal erve damamge that were causing my feet to invert! I say Dr
Serena Hu a year ago and I def have flat back and need
surgery /osteotomies to correct everything. THis would also be
ant/post. Needless to say I have not scheduled t yet and I need to! I
also had the opportunity to meet Mary when she went to her Dr in
WHittier! I will try to not be much of a lurker but more of a
contribuor! Oh I live in Southern Cali near Pasadena!!! I look
forward to learning more from this web site and maybe I can give some
valuable info to the group!

Cam,
I cannot get over all the things this site can do! Contratulations to
you! It's good to see all the friendly people here, too!
Most sincerely,
Carole M.

Hi Bonnie,
I have a question for you: Are you able to do any type of physical
therapy? I have found that gentle, non-impact activity (water for me)
really helps not only with my physical discomfort, but also with my
emotional well-being (and for me, they completely go hand-in-hand).
I cede to any one else out there on the board who has personal
experience with Bonnie's medication????????
Edie in NYC

Hi Martha,
A major shout out of admiration for how you are handling yourself
post-surgery. It's so encouraging to hear how active you are already,
and gives me great hope that when I have to face my revision surgery,
I can have a similar attitude, and be as proactive as you are about
your healing!
To answer your question at the end of your post, I definitely am
affected by changes in weather. It's been a brutally humid summer here
in NY, and that has been tough. But equally tough for me is the cold.
I'm betting others on this board have had similar experiences....
Keep rockin' woman. You are an inspiration. I can't tell you how much
it means to me (and undoubtedly others facing revision) to hear the
great success stories.
Edie in NYC

Hi Diane,
I have a feeling that, like me, you might be impatient with your
healing ability. Remember: the drugs, the anaesthesia, the getting
used to a new body, or even having to learn how to walk again, and
certainly having to depend on others for so many things...all of these
things made me very depressed too after my recent surgery at the end
of April. And mine wasn't half as invasive as yours (I had a
laminotomy/discectomy to relieve nerve pain in my left leg....revision
surgery coming in the future.).
I guess what I want to say is just be really gentle with yourself
right now, and have patience with the healing process. If you get
depressed, that's perfectly normal. It will pass. But most
importantly, be kind to yourself, and believe in your strength and
ability to heal. And as soon as the doctor says it's okay, try to be
active in some way. I have found (and I'm sure everyone will be sick
of hearing this from me) that water therapy is by far the best thing
for me. Also, being pro-active about my body is really helping the
sadness that creeps in from time to time.
Also, I cannot emphasize enough the power of prunes. Lots and lots of
prunes. Make them your best friend!
You will make it through this. And there are a lot of people here
interested in your story and more than willing to help.
Edie in NYC

Hi Kam:
Just wanted to reassure you that although Dr. Bridwell doesn't do much with pain management issues prior to surgery, my pain management was excellent during my hospitalization, as well as the pain meds. he prescribed for after discharge (for about 8 weeks).
Before surgery, he relies on your current physician(s), ie. internist or other, to continue to prescribe for you up until the surgery. At least, that's how it seemed to go for me.
Hopefully that makes sense the way I've explained it!
Sincerely, Martha
advokam <advokam@...

Lisa,
I am glad you got to speak with Bernie. I am hoping to do so today.
I am wondering if you asked her about a specialist closer to home or
if there was some specific reason for you to see this guy is St.
Louis. I have had problems with my neck and left scapula on and off
for years. I asked Bernie if we should be looking into that at the
same time and she said, "Dr. Bridwell doesn't treat neck problems."
She also said that Dr. B does not do pain management.
At first I was a little bothered by these comments, but then I
considered that if you do what you do best, you can get better and
better. If you try to do many things, it is really tough to be the
best at what you do. "Do few things and do them well" is the way St.
Francis put it. I am grateful that Dr. B is so focused on thoracic
and lumbar issues, but am a little concerned about referrals for
other spine-related problems in the future. Thank you for bringing
this up. It will be interesting to see if anyone else has an answer.
Please keep us posted on how things are going. You are a trooper!
kam

Thank you Cam for inviting me. I have had 4 Laminectomies & 2 Fusions & that
left me with Flat Back Syndrome. I walked around bent over since the end of 99.
I saw Dr Neuwirth in New York, Dr. Crandall in Phoenix, Dr Bridwell in St
Louis,and then I saw Dr Boachie in August. He told me to get myself in better
shape & come back in Jan. In Jan he agreed to operate. I wound up having surgery
June 8th at The Hospital for Special Surgery in NY. I had posterior surgery only
& was very glad of that as the surgery was very brutal ( lacking a better word )
it was the 1st time I had to go to a Rehab. I am now pretty straight & have bk
somewhat of a Lordotic Curve. I can now void without sitting on the toilet for
6-8 hrs. I am taking 1/3 of the MS Contin I took before surgery.........so I
guess I am glad I had it done though I am having a bout with depression. It is
so nice to see so many familiar names. I am very happy to be a part of this
group, it is the 1st time I have gotten in on the ground floor so to speak.
Love.
Diane

Martha - You certainly came close to choosing the wrong doctor (as I did!) but I'm so very happy that you found Dr. Bridwell and seem to doing soooooo well! As to the best time of year to have it done.....I had one in June and then another in November, and if I had my choice I'd go with the warmer months. I agree with you - when the weather is cold it's no fun, inside or out, especially following surgery!

Warm thoughts - Mary

Hi Martha, yes, it is Dr. Riew I was referred to. Thanks for the vote of confidence on him. That helps a lot.
I just cannot imagine traveling back and forth to St. Louis for any kind of ongoing treatment.

I'm sure it is possible that they could work together to devise a surgical plan when I go for revision.

Just feeling very confused and up with the whole thing.

Lisa

medglen1 <medglen@...

Hi Lisa:
When I saw your first post about your neck problems, I was
wondering if it would be Dr. Riew that Dr. Bridwell would recommend
for you to see. He does nothing but cervical spines and is
considered to be THE guy at Wash.U. I have spoken with other
physicians at Wash.U. who know of Dr. Riew and they have all said
that there is no one more qualified to address cervical spine
issues. (In fact, Bernie had her cervical spine surgery done by him
a while back!) I don't know about cervical spine specialists in
Houston, but maybe a follow-up visit with Dr. Bridwell could be
coordinated on the same day as seeing Dr. Riew (same building) and
come away with a plan on that one day. Also, regarding have
cervical x-rays done the day that you last saw Dr. Bridwell, my
husband happened to mention to me that x-rays often show "bone"
better than MRI's, at the very least in a different way than an
MRI. (my husband is also a physician, and is used to reading
films) Anyway, I know that it's a long way for you to travel again,
but maybe seeing them both in the same day, and having them speak
with each other that day would give you many answers and a plan-?
Just a thought,
Martha

Paulette - you and I have so much in common. I had scoliosis surgery in 1973 when I was 12 by Dr. Levine at the Hospital for Special Surgery and was fused from T6-L2. I grew up on Long Island and moved to Maryland to go to college. I stayed in Maryland and everything was fine - for about 30 years. I too was a dancer - ballet, jazz and tap and I taught dance as a part time job for about 20 years along with my full time job.

My back started to bother me about 10 years ago and just this past year after the birth of my daughter I have developed flatback. After going to orthopedists in the Maryland area I returned to the Hospital For Special Surgery and saw Dr. Boachie. I do indeed need to have a revision surgery and my surgery date is November 8, 2005.

Lorrie

Dear everyone:
I'm really overwhelmed, too, to read everyone's stories here.
Our computer had gone down for a couple of days, and when it came
back up today, I could not believe how many posts there were!
Everyone here has been through so very much, and we are so fortunate
to have each other.
My story in a nutshell:
In 1977, at age 18, I had my original scoli fusion
w/Harrington rod from T10 to L4, at Strong Memorial Hospital in
Rochester, NY. Cam and I found out that we have Strong Mem. in
common! We lived in Rochester, until moving to Chicago 5 yrs. ago.
All went smoothly and I was pain-free until around 1996 (then 37
yrs. old). After having two children, I noticed lower back pain and
leg fatigue beginning and it gradually worsened with time. With
time came leg pain and episodes of my back "giving out" when lifting
the kids. My original scoliosis surgeon was retired, and I
eventually went to see a spine surgeon in Rochester. He did not
shed light on the "flatback deformity" issue, and said I had
degnerative arthritis below my fusion, and put me on megadoses of
Naproxen. I did not return to see him, as I felt only focused
on "being thankful that I had the original surgery and my curves
were corrected". He would only say that "I was in the same boat as
everyone else who had a scoliosis fusion, and I needed to live with
it". I went on to live with the worsening pain until after we moved
to Chicago in 2000. I then went to see a spine specialist at
Northwestern. He explained the whole "flatback" syndrome to me, and
we tried conservative measures for a few years, ie. PT and different
anti-inflammatories, and it got me by initially, until the pain
started to become significantly worse. He then recommended a
lamineectomy, or foramenotomy, or laminectomy with a small fusion,
often changing his mind from visit to visit. He did not feel that I
needed a total revision. At that point, I asked him how many
revisions he had done, and he answered "under 10", I realized that
this surgeon was not experienced enough for me! In late 2003, I
found a scoliosis surgeon who was more experienced in revision
surgery here in Chicago. He recommended a revision from T10-L5,
leaving L5-S1 unfused for now. I felt comfortable with his bedside
manner and he had done hundreds of revisions, so I thought I'd found
a good match. Initially, I tried bilateral facet joint blocks to
ease the pain, but I had relief for only 3 weeks. Better than
nothing, but not enough! After having a spine MRI in January, we
scheduled my revision surgery for the following March (2004) and in
Feburary I donated 3 units of my blood for surgery, and arranged
child-care for the week in the hospital. During the time from Dec.
to March, I also had quite a bit of hip pain, and the decision was
made in early March to have an x-ray done of the hip, just to rule
out a separate problem there. The x-ray showed some mild
degeneration, nothing serious. I was finally told those results the
Friday before my Monday surgery, even though I'd called many times
to ask. During that same phone call, the nurse told me that after
reviewing my films with another surgeon in the group, my surgeon
changed his mind and would like to fuse L5-S1 after all, since there
was more degeneration at that level than was previously appreciated
on the MRI. I was taken aback at the change in procedure so close
to my surgery date, and told her that I had a few questions for him,
considering the change in plans, so she said he would call me either
later that day, or over the weekend (before my Monday surgery).
When I didn't hear from him by Saturday afternoon, I had him paged,
and when he called me back the "unthinkable" happened. He said that
yes, he would like to fuse down to the sacrum, but he was still
concerned about my hip pain (that I'd been mentioning to him since
Dec.) He said that he'd like to then get a hip MRI to rule out
avascular necrosis, even though it was unlikely. I felt like I was
in the twilight zone, as I said, you mean that I am not having my
revision surgery on Monday??? I was very upset with him, as he'd
had those hip x-rays for almost two weeks, and certainly had time to
make that decision well in advance of my surgery date. Needless to
say, I never went back to him, my 3 units of blood were then frozen
and I went on, determined to find the best revision surgeon outside
of Chicago! (I did have that hip MRI, and it was totally "normal"!)
I had a July 2004 appt. with Dr. Bridwell at Wash.U. in St.
Louis, and from there, everything flowed smoothly, with plans for
revision that Fall, anterior/posterior surgeries, a week apart (I
had the 3 frozen units of blood shipped to Barnes). The difference
between the previous spine surgeons that I saw and Dr. Bridwell was
so vast, I knew that I was in the right place, finally! It took me
those several years to learn the hard way that a spine surgeon does
not an experienced "revision" surgeon make! Thank goodness for my
twists of fate that lead me ultimately to the right path! I am now
8 mos. post-op (46 yrs. old) and feeling no back or leg pain. My
posture is perfect and I love the couple of inches that I've
gained! I've been walking 3 miles/days since 3 months post-op
(starting out walking 1 mile/day at 1 mo. post-op) I see Dr.
Bridwell regularly, and though it is a plane trip to St. Louis from
Chicago, I feel he's worth the trip!
While I still have my "psoriatic arthritis" issues to deal with
as they crop up and inflame other joints, my spine feels wonderful!
I have been in PT since February, strengthening my legs/arms. I'm
looking forward to the one year mark this Fall! The time has gone
by so fast, since the warmer weather arrived. I have to admit, the
winter was difficult immediately following revision, as I had to
stay motivated to venture out to do my walking every day at our
local indoor track. For me, I think that late Winter/early Spring
might have been a little easier in that regard.
Anyone else find that "time of year" made any difference to
them?
Thanks, all, for being there.
Sincerely, Martha

Hi Lisa:
When I saw your first post about your neck problems, I was
wondering if it would be Dr. Riew that Dr. Bridwell would recommend
for you to see. He does nothing but cervical spines and is
considered to be THE guy at Wash.U. I have spoken with other
physicians at Wash.U. who know of Dr. Riew and they have all said
that there is no one more qualified to address cervical spine
issues. (In fact, Bernie had her cervical spine surgery done by him
a while back!) I don't know about cervical spine specialists in
Houston, but maybe a follow-up visit with Dr. Bridwell could be
coordinated on the same day as seeing Dr. Riew (same building) and
come away with a plan on that one day. Also, regarding have
cervical x-rays done the day that you last saw Dr. Bridwell, my
husband happened to mention to me that x-rays often show "bone"
better than MRI's, at the very least in a different way than an
MRI. (my husband is also a physician, and is used to reading
films) Anyway, I know that it's a long way for you to travel again,
but maybe seeing them both in the same day, and having them speak
with each other that day would give you many answers and a plan-?
Just a thought,
Martha

Hi All,

First, thank you to all who set this group up. Hope it works!

About me: I had my first scoliosis surgery in 1977, age 36, 70/55 curve, Harrington Rod, fused T-3 to L-4, curve reduced to 50/35. Developed Flatback, DDD, had revision surgery in 1997 at age 56, with Dr. Boachie, posterior only, Harrington Rod removed, used isola system, 8 pedicle screws, cages, fusion extended to S-1.

After the last surgery, the only medication that made the pain bearable was MS Contin and I was on it for 6 months, noticed no bad side effects, weaned off it easily and have been on Neurontin ever since. I can't seem to tolerate the pain if I take less than 2400mg per day of Neurontin and even with that, I've been pretty miserable for the last few months and I hate the "fuzzy-headed" feeling I get from Neurontin. So, my new pain doc put me on Provigil to counteract the fuzzy-headed feeling and then, just two days ago, put me on 15mg 2x per day of MS Contin. My back feels so much better. Incredibly good. But, I feel so spacey. I wouldn't dare drive. My question: Anyone here know if the spacey feeling will diminish as my system gets used to the drug? If so, how long does it take? I didn't have this spacey feeling when I took MS Contin right after surgery, but I was in such bad shape then and not out of bed much at the beginning....

Thanks in advance.

Bonnie

I've changed the settings to allow anyone to join without
approval. "New" members will have posts moderated. This means that
messages will show up after us humans get on their computer, see the
email telling us that someone has posted, and we click on the
little "Approve" button. Because we have to know the message is
there, this can sometimes take awhile. (Fear not. Do not be
discouraged. Have some chocolate.)
Why am I going into this now? If some future new member doesn't see
their message and searches the group archives, they can see this
explanation.
Scott (Back in the saddle again...)

Hi Nancy....You are not the only one who has trouble getting
computer time when there is a teenager in the house...I am not there
yet (only one 9 y.o.)but I hear the complaint often....It must be
that in this day and age the computer has replaced the busy
telephone line of yesteryear....the more things change...
Anyway, my 9 year old seemed to be a little stressed by the
surgery...he came to vist during the week I was in the hospital
between surgeries...actually 5 days post stage 1, and I made a point
of being sitting up when he walked into the room with a little make-
up and my own jammies...his face visibly relaxed when he saw me..who
knows what kids can imagine when left to their own devices.
When I returned home we had on going "sleep" issues for
awhile....which is also partly develpmental for a 9 year old. I
think it had to do with worry and that just about every routine in
his life was changed and that was how it showed itself. I am
guessing that depending on the age of the kids..the behaviors
vary...but it is a change for kids when Mom is not up to her ususal
activity.
One book recommended to me by others who had surgery was "How to
Help Children Through a Parents Serious Illness" by Kathleen McCue.
It is not specific to this surgery and, in fact, deals with even
scarier diagnosis' such as cancer, heart failure etc...but it was a
useful reference in my planning for surgery.
I know you are a way off from surgery yet, if ever...but you are
right to believe that you will have to take your kids into account
when/if the time comes. Mary is correct that the time in the
hospital is very different from the original surgery and you are up
and about by the time they let you come home. You just can't do very
much, so you will need to figure out a plan for getting assistance.
You will have plenty of time to figure all this out I am sure! Cam

Test

This is Scott...just testing the membership and post settings

Hi everyone! Cam, I am so happy that you started this. I just finished
reading all of the posts but because it is my bedtime (yes, don't
laugh at me!) and I have to work Friday and Saturday, I will not be
able to post my story until sometime this weekend. I am thrilled to
see so many old friends and glad we are all together here! Even Sharon
from NH - how are you girlfriend? I never knew of your forum or I
would have visited!?! Anyway, didn't want to not take the moment to
say hello to everyone and let the support and friendship swell!
Valerie from RI

Hi Margaret,
Thanks for giving a quick bio...it refreshes my mind a little
bit...which seems like swiss chees a lot these days. Do I understand
then, that you have not had any subsequent surgery but are having the
customary problems? Are you out of work because of your back?
If the email volume is too big you can get it as digest or elect to
just read the messages directly from the site...just go to the site
and edit your membership.
Again, welcome, Cam

Hi Sharon,
I was so glad to see you signed in tonight when I got home. I am
anxious to hear how you have been since we last chatted. I know you
will update us when you get a chance. Just know that I was thinking
about you and am glad to see you here.
Take Care, Cam

Margaret... I'm happy you've decided to join! I will look forward to hearing more about your trials with scoliosis. We've all been dealt a pretty rotten hand in life from this, but it's nice to know there are others here who totally understand this and are willing to provide information, understanding, and support.

Welcome aboard!

~Mary~

Hi my name is Margaret, I am 35 years old and I reside in southwest
florida. I was diagnosed with scoliosis at the age of 10. I had
surgery at 13 with a single harrington rod.
I don't usually post often, but since this is a new group I will try
to make a effort to become more involved. Plus I am not working any
longer so I do have more time on my hands then I did in the past.
I was shocked when I checked my E-Mail today and I had 46 E-mails,
much of which were from this new group. I think that is just great to
see so many familiar names. I hope some that left the other group for
whatever reason find there way here. I also hope to get to know you
all a little better.
Have a good day, Margaret

Thanks for the welcome, Mary.
To everyone - Let me know if there's anything I can do for you (in an
internet kind of way, of course).
Scott

Nancy,
I know most message boards have lots of "lurkers"...so thank you for
telling me that in some way my posts were interesting for you! It
sounds like you have had to face more than your share of challenges
and I am sorry you would have a bit of a hike to get a good "read" on
your back. Do you get to Chicago...or perhaps St Louis ever?
I am sorry you are having to go through this...but hopefully you will
find a way...and lots of support here. You know how familiar your
story is in some ways...and yet each story is as unique as each one of
us...so please,please,please post when the spirit moves you. It really
is useful to have new questions and points of view to keep the
discussions fresh...my goal is to discourage just reading the board
and getting everyone engaged in the discussion.
This is not a solo effort...it is not my board...it is truely all of
ours...and I think we are off to a great start. I know how everyone is
holding their breaths for the next installment of my monthly updates
post-revision....hopefully I will get one done as soon as this new
time consumer in my life gets settled down!
Thanks for joining the discussion, Cam

I just want to check in and let the new group know I'm with you. I won't be
posting much for a week or so because I have family coming to visit for a
week, but I do hope to participate. Thanks to Cam for launching it.
I just went back through the last week or so of Feisty digests, and I think
I too have had enough, though I may check them out from time to time. I've
always preferred Kathleen's moderation style, which is to say, hands off.
Speaking of Kathleen, there's also her site, Salvaged Sisters, which is for
the most part a flatback forum. I mostly stuck with Feisty because the
messages came in my email.
I did start a little forum of my own when it looked like the New England
contingent of the group was leaving Feisty a member or two at a time. It's
still there, if anyone wants to use it. Doesn't have to be just New England
people; all are welcome. We didn't get much discussion going initially.
It's a nice format, and allows pictures to be posted right in the messages.
http://www.fused-and-refused.com/
But the important thing is that we stay in touch. I'll talk with you all
more later.
Sharon

For Nancy: Don't know if you're able to read the posts yet, but welcome! You'll find this group a friendly, safe place to retreat to - especially your physical problems are just a bit too much to bear alone. And don't worry about writing books.....we love to read! I look forward to hearing from you more often Nancy.

Hugs.............Mary

From: "J&J&Rs Mom" <njm62@...
horray!!! i thought i lost touch with all of you
people!! i saw on the medical group there was a new
flat back group, and low and behold here you ALL are!!
yay!!!! :)
i never have introduced myself at any of the forums,only
read all the posts all the time, to see how you have
progressed throughout surgeries or just starting out,
but i guess i will do so now! im nancy, 43 and had
harrington rod surgery back in 1975...i did good until
i hit 40 years old (had 3 kids with no problems!) and
things are slowly starting to get bad. I'm starting
to lean forward a bit. My doc (who knows nothing about
flatback) did an mri and said i have lots of arthritis
and a bludge disk and bone spurs. I'm on pain meds and
have been for 3 years now. Tried PT, and all that did was
make every part of my body in pain even more!
i'm located in upper wisconsin, and there are no good
doctors up here. I'm also a single mom, with 3 kids, one
of which has autism! (she is 9, my other two are 17 and 4)
So, its not easy to be able to get to any other parts of
the state or other states to find a good doctor, to find
out what is going on.
i have long nights trying to sleep, and it doesnt help
that im sleeping on a pull out couch right now! (have been
for about 2 years now). I feel most days like im about 80
years old.
There's so much more, but im writing a novel, and i just wanted
to say im glad to be here, and back with all of the "special and
helpful" people who i thought were lost forever!! :)
(i've missed your posts Cam!!!)
~nancy

I am so overwhelmed after having read each of your stories. I think it
is extremely generous that so many people were willing to share their
histories, and it certainly helps put my own situation into
perspective. Any newcomer to the board, or even people like myself who
were members of the other one, but didn't know your histories, will
benefit.
Talk about inner strength and survival strategies....you gals (and
potential guys lurking out there, too!) have it ALL.
Cam, Kam, Titch, Linda, Mary, and all the others that have posted so
far: Your stories and details are phenomenal gifts to share. Each and
every story on this board will most definitely help someone in some
way, and I know, that in writing mine, it also forced me to actually
think about what has been going on with me in a more serialized way.
This, in turn, will help me prepare for the future with my surgical
decisions down the road, and I'll have the great advantage of knowing
people who have been through it, and learning from those who were
willing to put themselves out there.
Sorry about this gush, but I really wanted to express my gratitude for
all the members of this new group, and Cam, especially, for making it
happen.
Edie in NYC

Hi Titch,
No need to apologize about the length of your history. It's really
interesting, and so beautifully written. Thank you so much for sharing it.
I just wanted to express to you how truly sorry I am that you are at
the mercy of the NHS. I'm hoping that, after all this time, and all
these surgical interventions, you have found the best way to deal with
them (the NHS).
You should be incredibly proud of yourself for making it thus far and
fighting the fight.
Best to you,
Edie in NYC

Oddities, such as my aunt finding it impossible to get skirts she
made to sit straight, finding one bag dragged on the floor if I
carried 2 shopping bags, and a change to not having much of a waist
and not looking so slim despite still being a bony child, started
when I was around 7-8, but were ignored. Over time I developed back
pain, and noticed my ribs were odd, and was diagnosed, aged 15, by a
neighbour who happened to have done her orthopaedic nursing training
on the spinal ward at the Royal National Orthopaedic Hospital.
I saw the local doctor I was referred to, and my thoracolumbar curve
measured in at 51°. I was told I had stopped growing and so would
never need surgery, and that it didn't matter that it had gone
undiagnosed as a brace would have done no good. 4 months later at
follow up, the curve was 58° and I was told surgery was essential,
but he wouldn't do it until I'd got my degree. 4 and a half years
later, aged nearly 21, and with no degree, after much pressure from
my GP he finally did the surgery - anterior discectomy, fusion and
instrumentation from T12-L2, and posterior fusion with Hartshill
instrumentation from T10-L2. At no point did he get a sagittal
xray, until my discharge xrays 2 years later, when I was pretty much
told to go away and have a nice life.
I was never able to stand for long after the surgery but otherwise
recovered well. In early 1999, less than 5 years later, I started
finding myself very stiff in the mornings, something which just got
worse. In the autumn I started to find that when I stood from my
chair at work, I had to pull myself out of it, and stand for a few
minutes before I got enough use of my legs back to walk, and then it
would be a good 1-200 yards before I was getting upright and the
limp was starting to subside.
I fell on ice in the December and got xrays. They assured me there
was nothing new on there, but put such an emphasis on new as to make
it clear something was badly wrong that shouldn't be. I started
research, and stumbled on the Salvaged Sisters delphi site and
immediately recognised myself. Convincing my family was a different
matter! I finally got to see a surgeon in the autumn, and his
opening line was to wave at the lightbox and my xrays, and
say "Well, *I* didn't do *that*!" I was referred for an MRI, which
showed my L2-3 disc had completely collapsed. I was also told that
I had been fused in a kyphosis over T10-L2, and had developed
compensatory thoracic lordosis and cervical straightening. I was
told surgery was essential, that it would involve removal of the
disc remains, anterior and posterior fusion, and at least 3
osteotomies (I think the plan was pedicle subtraction osteotomies),
but that as this would only fuse me to L3, with my history of disc
collapse, I would almost certainly need another surgery in the
future to fuse me further down, and eventually (if not in that
surgery) to the sacrum. That only I would know when I felt bad
enough, and yes, the films justified putting me on the list
immediately if I demanded it, but that I should consider the cost to
the NHS of multiple surgeries, and in general I should go away and
consider it all for 2 months, and let him know then. He kindly
loaned me my xrays, which I promptly took off with me for a second
opinion.
When I saw Mr Webb, he was of the opinion that there was no point at
all in waiting, because it would only get worse, and needed to be
sorted out. He wasn't in favour of removing the disc, because he
felt that the pain would be solved just by immobilising it, with
much lower risk. Essentially, lack of anterior aside, he proposed
the same surgery - Fusion from mid thoracic to L3, several small
osteotomies, so largely leaving the kyphosis intact, but pulling me
back above it - the anterior fusion complicated matters. It would
reduce my pain by at least 70%.
I spent 17 months on the waiting list in the end. By the time I
finally got the surgery, I could barely walk. I was leaned forward
by a good 12 inches when I straightened my knees, and I had keeled
off to the left, as well as the kyphosis progressing to include L3 -
it was now over 45 degrees. I was taking 2400mg/day ibuprofen,
4000mg paracetamol, 80mg dihydrocodeine tartrate. It was completely
insufficient, but with how poorly my pain was controlled after the
first surgery, I was terrified of taking more in case it made it
totally uncontrollable after revision. I was also having
significant bladder and some bowel issues by this time. Depending
on what sort of pain was uppermost, I either couldn't go, or I
couldn't hold or, or I just simply had no idea whether I needed to
go or not. Days like that, I'd trot off for a tinkle every 2 hours
on principle - people at work started to think I was really odd with
how long it would sometimes take me in the bathroom, and you can't
exactly tell them that it's because you can't pee.
The day I was admitted, I saw the assisting surgeon, who came to
take my consent. He basically said there was no chance at all that
they would get me upright, and little chance of getting rid of the
left lean. If I'd not been fused anterior, it would have been
fairly easy, but as it was, they were going to have to reach around
from posteriorly, and smash up the anterior fusion, with the
anterior rod in situ because it would be too dangerous to remove
it. The fusion was now going to start at T3 or T4, and would extend
at least to L5, probably the sacrum. It was now a 70% chance of
reducing my pain by up to 70%, and the paralysis risk had gone up
from the usual up to 5% chance of nerve damage to a 30% risk of
nerve damage and "quite significant" risk of paralysis. A bit
different from what it was 17 months previously, and not a good
frame of mind to enter surgery with.
In the end, they successfully smashed everything up, and did a
massive osteotomy at L2 (it's nearly halved in height at the back)
and L1 above. The new fusion runs from T3-L4, and I have totally
lost my leftward lean, in fact, much to my amusement, it has been
replaced with a slight right lean. I'm fairly upright - certainly
enough to take most of the pressure off my neck, which has been as
much of a relief as anything has. The pain is markedly reduced -
it's still there throughout the day in different forms, but it's
liveable. The bladder and bowel problems are more or less entirely
gone, and this was an almost immediate change for the better. My
left leg has been lazy ever since the surgery - initially it
wouldn't follow me into bed, I had to either get in just right, or
I'd be stuck and have to ask someone to lift it in for me! However,
this improved rapidly, and it's now only occasionally, if I am
extremely tired, or have walked a lot, that I notice, usually
because I have to assist it into the car with me, or I stub my toes
stepping into the house because my foot doesn't lift so well.
Again, it's nothing - considering I'd reached a point where my
walking was so bad, the only option was going to be to start using a
wheelchair, I'm just grateful for what I've got.
Unfortunately, it's not the end of the odyssey. I've developed new
problems at the base of my spine, and it looks like this is an L5-S1
spondylolisthesis. How long I can live with this remains to be
seen - it's almost certain to need stabilisation, whether a disc
replacement or final extension of the fusion to the sacrum. It's
been a big setback, because it came just as I was finally really
starting to feel well, but at the moment I've persuaded it to
settle, and seem to be keeping it stable. Should I get the fusion
extended, I suspect that I'll need more osteotomies to bring me
fully upright, and hopefully correct the right lean, but whatever
the case this is some way in the future. The NHS moves in
mysterious ways, and none of them fast.

Cam,
This is a beautiful site! I will post my history as soon as I can get
myself together.
Txbluebelle,
Kathy

Bless you Paulette - I'm so glad for you! I feel the same way of Dr. LaGrone and when the time comes, am most definitely leaning towards having my surgery in Texas.

You've just passed your one-year mark....congratulations! May you continue to enjoy walking straight and tall through life!

Hugs -

~Mary~

Lisa - Did you ask Dr. Bridwell if he knew of one closer to you? He very well may.

~Mary~

Kam - my thoughts and prayers go out to you while you await your surgery date. You've traveled a rough road in life, but our Lord will surely smooth out the rest of the way and be right by your side. (And your tummy will be fine! The usual anterior approach is not directly down the middle, but off to the side somewhat.)

Hugs..........~Mary~

Lisa,
I am glad you got to speak with Bernie. I am hoping to do so today.
I am wondering if you asked her about a specialist closer to home or
if there was some specific reason for you to see this guy is St.
Louis. I have had problems with my neck and left scapula on and off
for years. I asked Bernie if we should be looking into that at the
same time and she said, "Dr. Bridwell doesn't treat neck problems."
She also said that Dr. B does not do pain management.
At first I was a little bothered by these comments, but then I
considered that if you do what you do best, you can get better and
better. If you try to do many things, it is really tough to be the
best at what you do. "Do few things and do them well" is the way St.
Francis put it. I am grateful that Dr. B is so focused on thoracic
and lumbar issues, but am a little concerned about referrals for
other spine-related problems in the future. Thank you for bringing
this up. It will be interesting to see if anyone else has an answer.
Please keep us posted on how things are going. You are a trooper!
kam

Hi There: It's good to be part of this forum. Cam, etc., thanks so
much for getting it together so we can continue to support and
share ideas with each other!
I am a native Rhode Islander, age 55, and moved to NM 14 years ago.
My life evolved around being a ballet dancer since age 5, and my
scoliosis wasn't discovered until I was in my early 20's. I really
don't know when it all began for me, and always wondered why,
wearing tights and leotards all those years, that no one noticed
if/when I had a curvature. There is no history of scoliosis in my
family.
I had scoliosis surgery in the early 70's at Hospital for Special
Surgery in NYC (Dr. David Levein), fused from T9 to L3 or 4.
Slowly, but surely, I developed the classic symptoms of flatback,
DDD etc. I never, ever, thought I would have surgery again, and was
shocked when I went to see Dr. Boachie in NY in 1998, and he told me
that I would be a candidate for a revision surgery (flatback was
never mentioned at that time). I said no thanks, and hoped all would
just go away! Talk about denial! I returned yearly for appts. in
NY (I live in NM) to follow up.
I started doing alot of research and found Elizabeth Mina's
articles, and knew what was going on, much to my dismay. I was
slowly deteriorating to the point where I knew I'd have to face my
fears about surgery (the memories of the scoliosis surgery of the
early 70's weighed heavily in my mind).
I decided I wanted 2 other opinions, so went to see Dr. Bradford in
CA and Dr. LaGrone in Texas. I cannot explain why, other than
purely a gut feeling, that when I first met Dr. LaGrone, I knew he
would be my choice of surgeons. My decision had nothing to do with
the fact that Texas is closer to NM than CA or RI, as I knew the
extent of this surgery, and would go where I needed to go. Please
note here that I feel both Dr.'s Bradford and Boachie are excellent
surgeons!
My revision surgery was performed April 5 2004...anterior/posterior,
fused from T9 to sacrum by Dr. LaGrone, same day procedure. I was
on the hospital floor about 6 nights, and then transferred to rehab
floor for about 2 weeks. It felt, and still feels amazing to be
able to stand erect with knees straight! The iliac screws were
always tender, and I had them removed June 10, 2005 by Dr. LaGrone.
All other hardware stayed in. I definitely feel better without the
iliac screws.
I prepared myself well before this surgery, physically, mentally,
and spiritually, and have been very serious about my continuing
rehab regime at home since the surgery, and it has really paid off.
I feel great. I am even thinking of teaching some sort of movement
classes for adults, to include music/meditation!
I know how difficult this journey is, and with support from others
who have been through it, it makes it much more manageable. Good
luck to everyone, and enjoy each day.
Paulette

Ok Group - Got a question.
I went to see Dr. Bridwell on the 11th of this month. While there I
told him about the pain in my neck and upper back. He had some trouble
opening the CD I brought with my MRI on it so he sent me for xrays.
I got a call yesterday from Bernie. Dr. Bridwell wants me to see a Dr.
Riew who is a "cervical spine specialist". Of course he is in St. Louis
and I am in Houston.
Obvioulsy, I would ike to see the best doctors I can but I am not
rolling in money either.
So here is my question. Do you think it is important to see the doctor
that your (possible/probable) surgeon recommends? It would be much
easier to see a doctor here. Being in Houston I would think there is a
great "cervical spine specialist" here. And, how specialized do these
doctors get? Are there lumbar and thorasic specialists as well?
Lisa

It's not the quantity. It's the quality. :-)

I am 34 and had my 1st harrington rod (very short rod) surgery in
1981 at age 10. In 1984, I had a 2nd surgery, which added two
additional rods, some hooks, and some stuff that looks like baling
wire. ;O) (My x-rays are posted in the Photos section.) Dr. Fulton
Tompkins did both surgeries and he was a wonderful doctor...of
course, he is long retired now! At the time of my surgeries, he told
me that it was probable that I would need another surgery some day
to fuse the rest of my spine, but that I should wait as long as
possible and maybe it wouldn't be necessary. He explained that my
low back would be over-stressed and the wear and tear could mean an
additional surgery.
Over the years, I have had cortisone shots from time to time, but
didn't experience serious problems until the mid-90s. In 1996, I had
a 3rd surgery to remove my short rod (it was believed to be causing
me pain), but when they opened me up, it was completely encased in
bone and, according to my surgeon, was not worth the risks (blood
loss, anesthesia) to remove. He did, however, remove a bursa and
clean up some bone spurs, which were lodged n the tissue. This did
take my pain away for the most part. Between 1996 and 2003, I had
occasional flare-ups that were treated with a Medrol Dosepak,
physical therapy, chiropractic care, ice, pain meds, cortisone
shots, acupuncture, and anything else that was recommended as a
possible solution.
Fast forward to the last 24 months and I am headed downhill again. I
had my 1st MRI, which didn't reveal a whole lot (I guess I am one
who does have too much metal in my back for this to be beneficial),
and was sent to a pain management specialist. My doctor at that time
(who is a member of the Scoliosis Research Society) kept telling me
I was going to have pain and wanted to put me on a Medrol Dosepak
every time I had a "flare up." This drug makes me rather `off my
rocker' and I won't take it anymore. I think he got fed up with me
because he sent me to a pain management specialist AND an Orthopedic
doc who specializes in finding every trigger point in your body and
then sending you on your way. The pain mgmt. doctor tried an
epidural (terrible experience) and a couple of facet denervations
(with only short-term relief). After the 2nd one, I felt overwhelmed
by these invasive procedures and decided I needed to take a break.
I've been very physically active since 1998 and in February, I
finally, because he made me promise, took the advice of the pain
mgmt. doc and began water fitness begrudgingly. It was the very
best thing he did for me! Land exercise has been practically
impossible for me in the last year and getting out of shape is both
depressing and scary when you know you'll feel even worse if you
don't stay mobile!
Most of the time Ultram (Tramadol) is sufficient to control my pain
and I still feel fairly cognizant when I take it. When it gets
worse, I take Vicodin (Hydrocodone), but I hate the way it makes me
feel too.
Nine months later and a few insurance changes led to an Orthopedic
Surgeon in Norman, OK, where I live. After thoroughly interviewing
me about my history, he said he'd like for me to have a
CT/myelogram. I had odd memories of this from when I was 10, but as
nothing else seemed to be providing answers, I figured, what the
heck! The report states that: 1. I have a bony fusion from at least
T12 to L4 (duh) 2. There is moderate disc bulging with a left
paracentral disc protrusion at L4-5, impinging on the thecal sac.
Along with thickening of the ligamentum flavum and hypertrophic
facet joint changes, this results in severe spinal stenosis. 3.
There is moderate disc bulging at L4-S1, with some inpingement on
the S1 nerve roots, bilaterally.
My local OS is willing to do a lumbar laminectomy/discectomy, but
after finding information about flatback on the web (from many of
you posting here), I began gathering my records and discovered that
I do indeed have a flatback diagnosis (no doctor ever told me this).
On June 16, I learned that Dr. Bridwell in St. Louis is on my HMO. I
just returned from that appt. (it was July 15) and am scheduled for
a two-part surgery February 28/March 7. I will be fused to the
sacrum with iliac screws and two cages at L4/L5 and L5/S1.
I was a little disturbed to hear that he wants to do an anterior
fusion (I like my tummy just the way it is), but I am so ready to
have this pain behind me! I am hoping there will be a cancellation
and I can get it done sooner. I am not coping real well with the
pain. But, I trust my Creator's plans will surpass anything I could
put together and am exploring effective pain management options in
the meantime.
It is comforting to know that others understand what it's like along
the post-harrington rod/flatback journey. I had no idea that so many
people deal with this stuff until just a few months ago. It is also
nice to see that so many of us are compassionate and caring and
willing to what we can to help others.
Many pain-free moments to all of you!
kam

Hi Linda,
I think, generally, naming our doctors is a good idea..but I think the
member has to feel comfortable sharing the information. I am guessing
in Marys case, since she said the surgeon is no longer practicing, it
is irrelevant.
I know when I first started reading and posting sites I kinda got
spooked as I wondered if the doctors or their staff read the sites. I
didn't want to say anything at all for awhile for fear that it could
boomerang on me. I have come to realize that, most of the highly
regarded surgeons certainly don't have time for that...however they
are aware of the message boards....
I know when I was trying to figure out who to trust my back to I went
through all relevant message boards to try to make my own assessment
of who might be a candidate to have the privlidge of operating on me
(yuck yuck)...so it was helpful to know who the surgeon is/was.
One thing I would like to add to this site....(whenever I can
prioritize the list of things to to)...is provide a listing of members
that are willing to provide references for particular surgeons. The
references themselves will not be public...maybe just an indication
that the member will speak/email privately about their surgeon. I had
to just go back and find people who had had their surgeries some time
ago and had stopped posting....so I emailed them and they gladly
chatted....but I would have felt better to know that they were willing
to be contacted.
I also really wonder if there is value in doing more than listing the
top guys/gals and their contact info. I mean...I kind of doubt if a
new member wrote that they were contemplating revision surgery with
their local ortho that we would do anything other than encourage them
to get a second opinion that was valid. It is a sticky whicket to be
sure...
Am I rambling...? Cam

I just want to say how glad I am to see all of you signing in today. I
was feeling a little sad to think I was going to loose touch with many
of you...and now here you are...for each other and for me too.
I know many of you have friends who might also like to join us...so
please pass on an invite and the link...the more the merrier...don't
you think? I don't know how big a group we should aspire to in order
to keep the reading of it interesting and healthy in terms of
perspective....but I am guessing we have a good start tonight as I see
many frequent posters are now signed in.
Have a good night, Cam

Kam - the feeling is mutual. I look forward to reading your story! With 3 "kids" of my own who rule the house, I too know the canine unwritten law of "first things first". I'm looking forward to reading your story!

Hugs.....Mary

Scott - so glad to see that you've relocated! Welcome aboard. Your
knowledge and insightful input will no doubt be a delightful addition
to the group.
Smiles........~Mary~

Hi all.
I had a rough day and due to the incredibly annnoying sensation in my
hip flexor, I took an hour nap when I got home. I keep getting these
little reminders that I really am ready for surgery!
I just finished reading all of the posts and it was amazing! Since I
am fairly new to the diagnosis, I did not know each complete history.
Thank you so much for sharing your stories.
My hubby is on vacation with his youngest brother and father and my
kids (four-legged canine variety) are acting hungry, so I will run to
the store. When I get back, I will post my story.
Thank you again to all of you. I will definitely be directing others
to this group!
kam

There is something about Mary...
It is a heartbreaking story to read again, and I just want to say that
you must have the constitution of an ox to have all that surgery in
such a short spanse of time.
I read you as having a great heart and the ability to hope....and that
counts for something too. I know I will be pulling for you as you work
through the next round of tests/decisions....
All the best, Cam

Hi...
I think that as important as it is to know which doctors are good at
treating flatback, it's potentially equally important to name the
doctor when you have a bad outcome. If you limit any such posts to
the facts, I don't think anyone need worry about the legality of such
posts. Many of the people I know who have had the worst outcomes are
those whose surgery was performed by someone without the appropriate
training and experience. Having this information available will help
make this list an invaluable resource.
Regards,
Linda

Hello to all - I am a 52 year old lifelong Southern Californian who
was diagnosed with idiopathic scoliosis at age 12, wore the Milwaukee
Brace until age 17, then had a spinal fusion from T3 to L2 with a
Harrington Rod in 1977 at age 24. The surgery went well with no
complications and I again wore a Milwaukee Brace postopertively for
about one year. Following this, I went about my life so problem-free
that I didn't even need to see a doctor about my back for the next 20
years. I would tell those who commented on my excellent posture
about the surgery, saying that I HAD scoliosis as a teenager, but
that it had been corrected. Little did I know that it was to come
back and bite me in the butt.
I began having severe lower back pain in 1999 and was concerned who
to see, given my history of scoliosis. Imagine my delight when I
found 2 of the doctors who had done my surgery where still in
practice! I went to see the one who was closest to the city I lived
in, and she said I had degenerative disc disease in my entire lumbar
spine which would require surgery. I went with having epidural
injections for the pain for awhile, until my pain was so severe that
I told her to go ahead with the surgery. It was scheduled for June
6, 2001.
Looking back, I cannot believe my naiveity and ignorance. I had
never once heard the term "flat back" or "revision surgery". I had
complete trust that this doctor...I just assumed the discs in my
lumbar area had 'given out' after all the years of bearing the weight
for my fused spine. I had also had many previous surgical procedures
done besides my original fusion, and just figured I would go into
this as a "veteran" and hop right back on my feet as I always had.
Even at age 48 I was in excellent condition, so I wasn't too
concerned. I still don't understand why I didn't investigate
further - seek more opinions.
Soooooooo - in a nutshell; SURGERY #1 - I had both anterior and
posterior fusions done same day - L3 to the sacrum - with Isola
Instrumentation and pedicle screws. Within a week my left leg was in
excrutiating pain. Back to the OR. SURGERY #2 - removal and
reinsertion of pedicle screws for left leg sciatica. After 3 more
weeks in the hospital and rehab I finally got to go home. Within a
month I was leaning to the right at a 45 degree angle and in horrible
pain. This was August. I was told I needed surgery again, and given
a November date. SURGERY #3 - Removal of all instrumentation and
reinstrumentation, L1 to the pelvis, with Isola, pedicle screws, and
iliac bolts, for loss of correction with right decompensation. It is
noted in recovery that I can't move my left foot. Hauled off for a
CT scan and put on steroids. Next day, no improvement. Back to the
OR. SURGERY #4 - L5-S1 re-exploration with L5 nerve root
decompenation. Two pedicle screws removed and repositioned. No
improvement. Diagnosis: L5 nerve root damage causing permanent left
foot drop. Another 2 weeks in rehab. Sent home with a foot brace.
So that was my lovely year of 2001. In 2003 I notice a forward lean.
My surgeon was injured and is no longer practicing, so I see her
associate. She feels there is nothing wrong and suggests I try some
PT. Which I do, with no improvement. I feel that the lean has
increased, and I am also leaning to the right now. I also learn
about flatback (here on the internet). In desperation, I go to the
doctor who did my surgery in 1977, as I don't know who else to see.
I'm prepared with questions about flatback this time. I didn't have
to ask any though - he took one look at me and because of my
complicated history told me I needed to see a revision specialist
such as Dr. Hu, Bridwell, Lenke, Boachie, or LaGrone. THANK GOD -
FINALLY! So I went and consulted with Dr. LaGrone in Texas last
month (June) who agrees that I most definitely need to have one,
possibly two osteotomies done to bring me back into balance, both on
the sagittal and coronal planes. He warned me of how risky it will
be, due to scar tissue from all my previous procedures, and also due
the the previous nerve damage (increasing the risk for more). I have
been trying to get in to see Dr. Hu in consultation for 3 months,
with no luck so far. If she also agrees that I will be at a higher
risk for more nerve damage, I may just decide not to do it. I've
lost my foot - I really don't want to lose my whole leg. I may just
have to live with the deformity and the pain.
So - if anything can be learned from this lenghty story of mine, it
is that if you've had Harrington Rod surgery in the past and are now
having problems - of any type - PLEASE PLEASE consult with one of the
revision specialists across the country, which there aren't very many
of, before you have anything done! Don't be a dufus like I was!
Peace...~Mary~

Lisa,
I guess in the flurry of all the other goings on I didn't learn that
the MS has now been completely ruled out...I am so happy to hear
that....at least I think I am?!! I am not making fun...I am just not
sure if in some ways the MS might have offerred a quicker route to
resolution of the bladder problems you are having. I certainly do not
wish MS on anyone....or flatback.
When I was reading your post I was struck by the phrase "degenerative
arthritis".....I bet by the time the mid 90's rolled around that was
the "catch-all" diagnosis for all us flatback types....I know I heard
it...and they always kinds looked off to the wall when they said
it....hhmm.
Welcome aboard and thanks for re-telling your story. Cam

I was born in Odessa Texas.... Just kidding.
I had surgery in 76 by Dr. Erwin in Houston, 8 days before my 16th
birthday. I think everything for the first 10 years or so went as
expected.
When I was about 27, I started to realize I had a problem when I
couldn't stand up straight in the mornings because of the pain in my
lower back. After a while I went to see Dr. Erwin (didn't occur to me
that he was in pediatrics) so he sent me to Dr. Heggeness at the
Institute for Spinal Dissorders. Dr. Heggenesss gave me some Daypro
and sent me on my way. Since he didn't seem too concerned I thought
it may be my bed so I spent the next two years sleeping on my couch
which help quite a bit. While I still had pain it was controlled by
the anti-inflamatories and wasn't nearly as bad.
Somewhere around 1995 the pains started shooting down my legs so I
went back to Dr. Heggeness. Again, more drugs. After repeated visits
for a multitude of pains, he told me I had degenerative
ostioarthritis and that one day I might need surgery. But, it is a
very difficult surgery with about a year for recovery. (Never
mentioned that is was because of my Harringotn rods.) In 98, I
started having knee pains and needed orthoscopic surgery due to a
torn ligament. I was actually kind of happy because it is classified
as a "sports injury". Actually it was just a mental thing since it
tore while I was asleep. ;)
During all this time I kept pressing my sister (who is a doctor) on
why I am having these pains and problems. I knew all along it was
related to my rods but could not find anyone else who thought so.
Like many others here, I got my answer on line.
Once I had a name for it all I started to research it and made appts.
with Dr. LaGrone and Dr. Kostuik (about the fall of 2003). Both said
that I needed surgery when I was ready. I went ahead and had my
meylogram and CT done and sent the results to Dr. Bridwell. Again,
the same answer.
For the last 12, or so years, I have had some control problems with
my bladder. This fall I had a couple of episodes that made me realize
it was getting worse. Again, on line I found that it coule be related
to my back so went to see Hegeness again. After, what seems like
1000's of tests and way too many specialists, we have ruled out MS
but still don't have an answer.
The pains are increasing now to a point that it is very
uncomfortable. A new pain (in the last 3-4 months) in my neck and
above my fusions has yet to be answered as well.
I saw Dr. Bridwell last week and he thinks I am ready for surgery but
wanted to send the results of my tests on my neck to a specialist.
As of today, I am supposed to see a "cervical spine specialist" in
St. Louis in mid-August that Dr. Bridwell asked me to see. From there
I will make a determination on what to fix first.
I had hoped to go ahead with the revision surgery this year, but at
this point I think it will have to wait until next year.
Hope that this may help someone - it would have helped me if I had
been able to find a group like this 20 years ago.
Thanks for listening - Lisa

For those of you following along without a program, I am a 49 year
old female who had original scoliosis surgery in 1972 at Strong
Memorial Hospital, fused T4-L4..single Harrington rod.
I did not have any problems with the surgery, although the self
esteem certainly took a whack being encased in plaster at 15 years
of age! The day I got the cast off I went dancing and I never really
looked back (no pun intended).
I lead an active life..I skiied, owned and rode horses, gardened and
hiked whenever possible. When I became pregnant at 39 I was
delighted and the only difference for me was that I knew going into
delivery that I would not be offered and epidural...which didn't
really matter. Delivery was pretty much a breeze for me.
During the winter of 2004 I began to notice that my friends were
consistently noticing that I was leaning forward and telling me I
must be tired or something. Not long afterward I started to
experience hip pain and tingling in my right foot. My local ortho
put me on the usual course of NSAIDS and prescribed PT. Therapy only
seemed to make things worse and when I questioned my ortho as to
whether my scoliosis could be the problem, he shook his head and
told me that it was possible, but there was not anything to be done
about it. Too dangerous. I couldn't accept that answer, thinking
that is that was how I felt at 48, I would never be able to "go the
distance" or accomplish the things that I hoped to in life.
I made a search on the internet and very quickly determined that it
was likely that my Harrington rod/prior surgery was now causing me
to have symptoms consistent with Flatback syndrome. I searched all
the message boards and found that Dr Frank Rand in Boston might be
able to help me. When I saw him in April '04 he confirmed that I did
have "flatback" and outlined the required surgery. He also felt that
I was not quite ready for surgery but gave me information and
guidance on becoming educated to what exactly we were talking about.
Over the summer I scheduled a second opinion with Dr Boachie-Adjej
in NYC. He confirmed Dr Rand and again stated that the surgery is,
in fact, elective...and if and when I was ready to feel free to
contact them further.
As the holidays approached my pain levels shot through the roof. Two
epidurals failed to control the pain and, as I work as an Air
Traffic Controller, narcotics were not an option. I decided that I
had crossed whatever that "magic" threshold is and called to
schedule a second meeting with Dr Rand. I brought my husband and we
went over my 5 pages of questions for at least an hour. (I will try
to get those up in the files section soon). I came out of that
appointment with a schedule for two surgeries, one week apart, in
February 2005.
My surgeries at New England Baptist Hospital went as expected. They
were long and grueling and I felt like I had been hit by a mac
truck...but I survived them. I returned home to a husband who had
taken 3 months off to help he heal...so I focused of that.
I was stunned by how "upright" I felt, but as the months have gone
by it now feels fairly normal. I am back up to my full height of
6'1" and feel stonger evey day. I am still on restrictions but
expect by the end of summer I will be allowed to do a bit more
stretching. For now, I swim and walk when I can.
I believe Dr Rand did an excellent job getting me to where I am
today. I have no signifigant pains...still tiredness in lumbar spine
at the end of a long day in the tower...but I come home and lay down
for about 15 mins and it goes away. I believe it will take a year
until I am back to myself...at least that is what most people tell
me.
I hope I haven't bored anyone with this long recap. I just hope
others will also re-introduce themselves so we can remember where we
all are on this journey.
If anyone has any questions...feel free to probe the depths of my
overview! Cam

Edie,
Wow, I thought I had a tough climb getting up three flights of
stairs to the tower...and of course I am never hauling up groceries
and all the "stuff" of life.
I hope after you return to work you are still able to keep up with
the workouts...I know that has been difficult for me. The one thing
that really seems key for me now...and was prior to
revision...is "getting ahold of the abs" before I do any move of
consequence....leaning down/over, picking something
up...whatever...and my posture looks much better too!
Great idea about re-introducing ourselves...I shall also.
Take Care, Cam

Hi Revisionists!
I am a 45 year old woman. I underwent Harrington Rod surgery in 1982
at the age of 22 at the Hospital for Joint Diseases in NYC. I had a 63
degree right thoracic curve, and it was corrected to approximately 30
degrees. I was fused from T3-L4, with a single Harrington Rod attached
to the left of my spine.
About 6 years ago, I started noticing symptoms of what we now call
"flatback". I went back to my original surgeon, and found out that my
L4 and L5 were in a state of serious degeneration, as well as spinal
stenosis, bone spurs, and spinal arthritis. I chose, at that time, to
address this by intensive physical exercise that included swimming and
water workouts, as well as light weights and yoga. It also included a
balanced nutritional diet with vitamins and minerals added, based on a
wonderful book called "The Arthritis Cure" by Theodosakis, Adderly & Fox.
This worked out great for me until a year ago when I began
experiencing severe nerve pain in my left leg. I had 3 spells of this,
lasting up to 8 weeks each, but the third one did me in. I knew I
couldn't recover from this one via the old methods (I tried), and went
back to my original spinal surgeon.
To make a long story shorter, I was rendered completely immobile on
the left side of my body from the nerve pain. I had an epidural for
temporary relief before planning a laminotomy and discetomy to help
"clean up" the area around the nerve, and in hopes it would help me
walk again.
I opted for this procedure because I was simply not ready physically,
emotionally, or financially to undergo the full revision surgery. I
went into this surgery fully knowing that the chances were that I
would have to undergo fusion to the sacrum in the future.
As it stands now, I am approximately 3 months post-surgery, and my
nerve pain in my left leg is completely gone. However, the lower
lumbar pain from my flatback is still there, and harder to deal with
because of this recovery process. I am returning to work on August
1st, and am trying to hold on until April of next year before I start
planning further surgery. This is due to the fact that I want to try
to give my body at least one year to recover (longer if I find I can
live with my current physical status), and I need to wait to accrue
more time off and more paid short-term disability. I also live in a
walk-up apartment, so it's 40 stairs to our home. We are in the
process of trying to buy a co-op in an elevator building, which will
become a real necessity.
Sorry for the long-winded message. There is more to tell, which I will
share when appropriate, but I just wanted to get my history posted so
that we might begin the process of having a frame of reference of all
of our experiences.
I hope everyone will consider doing the same... I really believe it
will provide a lot of solace and help for a number of people out there.
Best to each and every one of you. I am so looking forward to the
positive and practical advice I know I'll be able to find from this
wonderful group.
Edie

Hi all,
First off, thanks so much for getting this together! I am going to
create a separate post telling my story once again for newcomers, or
those of you who don't know it already. I am hoping that all the
members will re-relate their stories on this board so that we can
start building a new informational site based on personal flatback
experience.
See you in the next post,
Edie

Hello.
I feel like I just moved into a new house and am busy rearranging the
furniture so it will feel like home. I hope you all make yourselves at
home. Please feel free to invite whoever you want to our new house. It
is all of ours. As I said, I plan to rotate the job of "managing" this
group so that hopefully this duty will not fall too heavily on any one
person's shoulders...(and thus spine! Ha!)
I do have the member settings set up initially to approve new members
posts, but as soon as I can see we haven't drawn the attention of the
ever active spammers I will reset the member to automatic.
This is new to me...but hopefully with your help we will have an
interesting time here, a place where we can all learn and grow and
find our way through this together.
In Scoliosis Sisterhood (or Brotherhood),
Cam

Great job Cam! It may take a while to get this group up and running,
but I believe we'll have a safe, friendly, informative,(and free)
site to offer those in search of answers on their flatback problems.
So let's get this party started!
~Mary~